new pics.

A New Day...

So there has been some things happening recently in our lives. As you all know or will find out life sometimes throws you curve balls and you have to deal with things the best way you know how. My husband and I have been through a lot of devastation in the past nine months however the grief has to be put on the back burner because we have a little girl to raise! For many different reasons we have decided to divorce and move on with our lives as separate individuals. We both love Kyla more than life itself and she is always our first priority. We are always able to agree and find common ground in the choices that have to be made for her upbringing. She is surrounded by a family that loves her and wouldn't want to see her hurt for anything, so on that note I want to continue my blog postings and keep up with her progress because I am sure that we are not the only people in the world who have decided to separate who have special needs children;o)

Now for the great news... Kyla is 9 months old and she is gorgeous!!! She is crawling, sitting up, standing up....all the good stuff! I can't even believe that it's been 9 months I feel like I just brought her home yesterday;o( Jeremy (kylas father) and I couldn't be more proud of our little one. She has a doctors appointment coming up in the next couple of weeks, so I will be sure to fill in all the details and info about the progression of her condition as soon as possible. Thank you again for all the support and for keeping up with Kyla. I truly hope that our experience will be able to help at least one family cope with anything they may be dealing with in life.
take care ;o)

Update...

After 2 hours at the doctor. She was sleepy.

Fireworks yeah!!

Diggin into the birthday cake!

Her and Doctor Kanga and nurse Barbra.

So yesterday was Kyla's doctors appointment. She now weighs 16.26 lbs!!! She is my little chunky monkey;o) Although her pulmonary visits typically last 2 hours, it is always a great visit and I always leave feeling positive. They shared with us the news that a drug that is in the final stages of FDA approval. It is supposed to help with the production process of the salt glands. Since Kyla's don't work properly this medicine will help her to absorb the salt which would draw in water to her cells. Water is what is missing in her cells, and the lack of the H2O is why her body can't break down the mucus like a normal person's would. It is all very complicated but the more I hear certain terms and research the more I learn and understand exactly what the doctors are talking about. At any rate it is great news and I just know a cure is right around the corner.

They changed the dosage of her enzymes so instead of having to take 4 pills per feeding she now only has to take two, same medicine just stronger. They said her lungs sound clear, but they are going to put her on a medicine, I believe it's called Pulmizine. It's purpose is to break down and thin out the mucus that will collect in her lungs eventually. Although she may not need it now she will down the road and it won't hurt her, so it's more preventative.

The doctors gave the go ahead on starting baby foods!!! So watch out sweet potatoes and cereal!! I'm not sure if they gave the go ahead on icing from her birthday cake, but on Friday we celebrated her 6 month birthday. This may seem silly but it is important to me because not so long ago a baby born with CF rarely lived past 6 months old. It's a milestone in my book for sure ;o)

She is doing great and her physicians couldn't be happier with her progress. All of this just reassures me that I am doing something right and that we are gonna be okay.

Rough Day...

I'm just going to start fresh with a real post....
Today was a rough day. Yesterday my mother proceeded to tell me a story about a little girl who has been living with CF for 16 years and had a pancrease and liver transplant recently. Her organs have been damaged by the disease over the years of medications and the operation was the best solution for her. Although I see the positive in this story it is so hard for me to think about my daughter at age 16 having major surgery to replace useless organs. It makes me think of pain and hardship that no child should have to go through. It makes me think about when I was 16 what I was doing, and it definatly wasn't worrying about if my organs were going to fail me.
I have to be honest with myself, I am still in a state of absolute denial. I have yet to read any sort of in depth information online or try to find any forums or chat rooms for support , I have sort of just put the actual fact that Kyla has Cystic Fibrosis to the back of my mind and I don't think about it in long term....It is starting to hit me that I have to think long term and I have to be aware of the potential threats this disease poses for my child.
It's just so devistating...my sister put it the best way , this was when I first told her of the diagnoses, she said "Emily you have the right to mourn, mourn the loss of what your childs life could have been without the illness." I suppose she is right but for some reason I haven't really done that. Crying isn't always mourning. I never stopped believing in my heart that Kyla is going to be fine and she isn't going to have all the symptoms that the other kids with CF have. This is not reality.
So today for the first time I got online and I read and read and read, I got nothing done because I read for so long. I read about the history of CF. I read blogs and websites and personal experienes of people of all ages living with the disease. I noticed a lot of people who died between the ages of 25 and 30....it's awful and I decided that was enough reading for the day except for one last blog from a man who is 31 living with CF. He was diagnosed when he was born, just like Kyla. He went to college and he is married and he takes the enzymes, and vitamins and does the breathing treatments. He has only been hospitalized once. All of this was making me somewhat more optimistic, and then recently he posted that he and his wife had their first biological child, this past August. A little boy,who is as healthy as can be. And it truely made me realize that Kyla has a life to live. And she has opportunity do do everything I did and more. And the simple thought that one day my baby could have a baby of her own, as normal as that may be for other people,the thought that she will have a chance to experience all lifes wonderful blessings, well it's inspiring to me because I want her to know all the joy that a child brings you in life. I want her to know that no matter if a baby is born perfectly healthy or with a life threatening illness, they are still a blessing from God and are the greatest gift a person can recieve. I love my child more than anything, and I am looking forward to watching her live a long healthy happy life and I hope others are doing the same with their children ;o)

Our Experience....

Kyla

This is a one month prescription

630 pills. This is Kyla's percussion tool

used for respitory therapy.

"The Binder"

For those of you who don't know already, our daughter Kyla has Cystic Fibrosis. It is a rare genetic disease that is most common in white anglo-saxton decendants. Most people don't know but to be a "carrier" of one of the genes is very common, however to just be a carrier is not to have the actual disease. It takes both biological parents having the gene to produce a child with "CF".

Well both Jeremy and I carry the gene therefore Kyla was born with it. 8 days after we brought her home I recieved a phone call from the hospital saying that he blood screens came back abnormal, which was very common and they needed her to come in a do another set of them. I had never even heard of cystic fibrosis so I wasn't sure what exactly we were dealing with, in my mind I guess I thought "we will just get her some medicine and it will be fixed", but I was very wrong as I would come to find out.It took her 4 weeks just to reach her birth weight. She was this tiny little thing. Also she was having serious digestive problems that were painful for her and even more painful for us to watch her go through. There were signs that were there "failure to thrive" which means she wasn't gaining weight, I suppose looking back I knew but I was praying to God that it was all in my head and she couldn't possibly have anything wrong with her, she was my child and she was perfect... After weeks of testing and re-testing, her being so young there was only one true way to find out which was to take blood and send it to the labs in California, this took 4 weeks to confirm the worst news I have ever recieved. Our daughter has Cystic Fibrosis and there is NO CURE. Those are not words that you want to hear ever let alone being a first time mother.

It was devistating, I don't think it really set in for awhile. I just pretended it wasn't there. Until our first visit to the doctors office... not the pediatrition, the University of Kentucky Pediatric Pulminary Clinic. It even sounds scary. That first visit was aweful it was very serious and a lot of information to take in. It lasted 4 hours, and it came with a team of doctors....a dietition, and respitory therapist, a social worker, a primary physicain, and a nurse coordinator. After explaining to me what the disease was and that as of now those patients with cytstic fibrosis have a life expectancy of 37 years old, yes on top of all we had been through they were now telling me that my child basically had a shelf life, after all of this they gave us a three ring binder that was about 4 inches thick and sent us on our way for the time being.

Small changes came first....they put Kyla on enzymes to help her digest her formula, so at 5 weeks old she began eating applesauce with the medicine mixed in so she could take it. She takes this before every meal and always will, forever. She also started taking special vitamins once a day that mix in her formula. Shortly after we got her weight gain and digestion under control we began respitory therapy. This is done with a small tool, twice a day for 20 minutes I pound four different areas of her chest back and under arms with this tool. It loosens the mucus in her lungs and keep them relatively clear of infection.

So far all of the preventative meds and therapy have helped tremendously. Kyla is now in the 50th percentile of her growth chart for weight and the 75th percentile for her length. She is happy and healthy and smiles for days. All of the above has now become second nature to my husband and me and our families. It is just something she has it's not who she is. We thank God everyday that we were blessed with Kyla just the way she is. She is going to have a wonderful life and she is lucky to have two parents and many extended family members that love her more than anything in the world.

I will continue to keep updates posted about all the new adventures we experience as we raise a child with an illness. Hopefully this blog can be of help to other mothers out there who are going through anything similar. I know that there are times I feel as if I don't have anyone that can relate to me and I want to make sure I am doing all I can to inform and support others like our family ;o)

A Little Introduction..

Hello, my name is Emily Blair my husband is Jeremy and our daughter is Kyla. We have been married for a year and a half now and we have been together only a total of two and a half years. My husband and I literally met by chance and were talking marraige by the end of our first date...for me it was love as first sight for sure!! We were engaged two months after meeting and married on our one year anniversary to the day. We found out that we were expecting less than one month after returning from our honeymoon. Our first year of marraige was a whirlwind and it hasn't been easy, but we wouldn't have it any other way now that we have our baby girl Kyla ;o) She is our whole world and by far the best thing either of us has ever done. She is about to turn six months old on July 3rd!!! I cannot believe how different our lives are now...looking back on what our priorities were and the kind of lives we were living compared to now....we have done a complete 180!!! We love being parents and we love being married and although we have our moments when it all catches up with us and we feel overwhelmed and unsure of whats next, we always find a way to come together and pull one another up "by the bootstraps" so to speak and move along, having a partner in life is a wonderful thing.